Posts Tagged ‘how-to’

One of the issues that arises repeatedly is getting the right amount of sleep. In the early years of debilitating Lyme Disease, I slept a lot, 10-16 hours a day. It seemed like I couldn’t get enough. When that phase was over (after I started antibiotics), it’s been more varied.

I’ve gone through periods when I can’t sleep well or for full 6 to 8 hour stretches. I end up tired. I want to sleep more but I refuse to take sleep drugs or herbs. I tried a homeopathic sleep remedy for a few days. It did help me stay asleep longer, but the real problem at the time was not being able to fall asleep. Plus it made me a little groggy for the first half of the day.

I’ve read a lot about how to fall asleep, relaxation and breathing tips, conflicting accounts of what to do and what not to do before bedtime. I’ve tried many techniques. What seems to work for me is to stop doing work, housework or bills or other things that get my mind into the “doing” mode at least an hour before bed. Somehow the blog doesn’t fall into this category because it clears my mind of the aches and pains of the day. When I can’t sleep after doing some breathing exercises, relaxation exercises or several minutes of forced yawning followed by lots of natural yawning, what I do is call a friend. We set a timer for five minutes each (to prevent a conversation that goes on forever and keeps me up very late) and we each get a chance to talk about the day that ended or whatever is on our minds. Often I’ll end up laughing or yawning and relieve the burdens of the day enough to sleep.

Sometimes even this doesn’t work. So I rest. I spend the night thinking of my favorite scenes from movies, reminding myself of particular good times with my friends or family, imagining what adventures I’d like to have at some point in the future, or other generally upbeat things. I try not to make plans or figure things out, as these tend to make my mind more active and less relaxed. Resting is sufficient when my body is amped up for some reason. I still end up having a hard time the next day, but I don’t stress out about not sleeping. Stressing about not sleeping make sleep harder to come by.

I have a personal policy that if I wake up after 4am and I can’t fall back to sleep within a half hour, I get up and watch a movie. For me the worst thing is to toss and turn late in the night. Then my dreams seem too real and slightly frightening. A movie is enough to get me out of my head, even if I only watch a half hour before going back to sleep.

I nap during the day, 2 hours in the afternoon, when I need to reboot my sleep cycle. Somehow the afternoon nap (starting sometime between 2 and 4 pm) calms my body for the rest of the day and I can rest better.

Other times, I still need lots of sleep: 10 hour nights and 2 hour naps. It’s pretty varied. I love naps and even when I don’t nap, I find it essential to lie down for part of the afternoon. Otherwise I can’t get through the day, or at least I can’t manage that 2 days in a row.

I struggle not to feel bad about how much I need to let my body rest, how little I manage to get done in the world. But I can’t change it any faster than I’m doing. So I enjoy sleep when it comes, I let myself rest as much as needed, and I don’t worry when insomnia pays me a visit.

Coiling

Day 5 in the Lyme plan is my head. I’m not excited about it, in fact, I’m a little afraid. So I won’t do it until immediately before sleep.

I slept okay last night, maybe 7.5 hours, no interruptions, no sweats. But I’m so tired today.

I took my last dose of florinef yesterday and I’m starting to feel it. The weekend is going to be tricky. I anticipate the same dramatic withdrawal that going down to a half dose gave me, but I’ll wait to see if that actually happens. As such, I’m trying not to have any plans.

Mostly tired. I’ve got other blood pressure symptoms, altered vision, feeling a bit off balance–even when I’m sitting down, but no dizziness or whiteouts so far.

The Herx report: I’ve got back pain, up and down my spine, particularly my sacrum, and along my paraspinal muscles. I’ve got bone pain in my ribs. My head hurts a lot but not unbearably. I’ve got some light sensitivity.

My various fungus infections are still active but slightly less than yesterday: chest itch, cloudy urine with hesitation, raised rash on my right arm. I’ve got some sinus congestion today, too.

For most of the time I’ve been treating Lyme Disease and my other tick-borne infections, the main treatments were antibiotic pills and other supplements, rest and, when I was up to it, exercise. Things got better as I did more detoxing, although that, too, was mostly through oral agents.

These treatments were not enough for me to cross the finish line. I had to add colonics and hot baths to the detox treatments. I had to change my diet. Given my energy level, these were time consuming activities that took away from the incredible amount of rest I needed.

When I was taking intravenous antibiotics, that ate up 4 days a week between travel and having the drug administered. Getting rid of Lyme Disease became more of a full time job.

Coiling is another time consuming activity. I have to plan my days so that I space the treatments apart by about 3 hours to allow the coil to cool completely before using it again. I have to plan my meal times and supplement intake to allow the detoxing agents to do their job without absorbing much needed nutrients and medicinal agents. I have to leave time for exercise and rest.

This is a full time job.

On days like today, I want to blow through a bunch of tasks that I’ve put on hold. But they come second. I don’t finish what I’d like partly because I’m slowed down by coming off florinef and planning my treatment schedule and interrupting what I’m doing to get all the coiling in. It’s not easy.

Coiling is not for everyone. It isn’t a quick fix. There’s plenty of pain. It requires a fair amount of time on a daily basis. It requires planning and monitoring. There isn’t a manual or a doctor to tell you what to do. It doesn’t have tons of data “proving” its efficacy.

It seems to be working, for me and for many others. So I soldier on with my coiling and detox protocols. I keep aiming towards being fully healthy again.

Coiling

I added another minute to my back for Babesia, trying to get more coverage of all the bones in my hip and low back area. It’s also Day 3 in the Lyme plan: abdomen, chest and arms.

I did okay last night with sleep: no sweats, only one interruption, for strongly Lyme-smelling urine.

I was tired in the morning, moving in slow motion, but still moving.

No florinef today. I started to feel it at around 4 pm. I feel it more now with a funny off-balance feeling in my head and in my vision. I wore compression socks at my cardiologists urging.

I have pain in my lower back tonight on the left side by my sacrum.

I’m getting a herxing headache, with light sensitivity, floaters and emotional swings. I took diatomaceous earth just as I started writing. Hopefully DE plus sleep will be enough to get me started again in the morning.

I spoke to one of my fellow Lyme-combattant-coilers last week. She sent me a different coiling schedule than the one I was using. (I mentioned this the day I spoke to her.) It’s an interesting idea that I’ve been processing for the past week or so while I try out the concept.

The basic premise is that I’ll cover my whole body with the coil over the course of one week, with 3 minutes at each location. Since it comes out to over 100 minutes of coiling, it can’t be done in a single day. The way to work up to it is to start at about 30 seconds to 1 minute at every location and work up to 3 minutes at every location over the course of a few weeks, increasing the time every round.

In contrast, the previous coil schedule had 5 minutes on my abodmen and 1-2 minutes in other locations, coiling my whole body on one day once a week. I started on my abdomen only, working up to 5 minutes. Then I’ve been taking my time adding in other body parts. I made a slight shift before I talked to my friend, coiling my joints for a minute a piece every day for about a week. I think I knew I needed to coil more.

I’ve been trying to figure out a version of the plan to cover my body. I think I’ll break it up into:
Day 1 – feet and legs
Day 2 – hips, abdomen
Day 3 – chest, arms, shoulders
Day 4 – back
Day 5 – head

I’m not sure it will work out quite so evenly, but that’s how I’m going to proceed for now. Today is Day 1. I’m starting with 1-2 minutes in each location on my feet, calves, knees and thighs. I don’t expect to Herx from this. I’ll add in a minute on my sacrum every day because that’s where I think the infection is most intense.

We’ll see if I can even handle this for one week.

Coiling

In addition to all this, I added my mid-back for Babesia. It’s only 30 seconds and I’m not expecting a big reaction. Just in case, I thought I’d add it on a Lyme day that isn’t likely to give me problems.

I can feel the lowered dose of florinef in the evenings. My blood pressure, vision and balance feel a little bit off. But the second dose reduction has been less dramatic than the first. I’m not dealing with the body temperature swings this time. Hopefully the same will be true when I stop taking it all together.

My menstrual insomnia is over. That often happens after my period starts: the insomnia preceding it goes away with a nap the first day of bleeding. No night sweats. Just peaceful sleep for 8.5 hours. Cramps today were pretty mild. But I was tired.

I rested, mostly horizontally, this morning. Then I went to yoga class. We did some extra spinal twists. I could feel them in my sacrum and lumbar spine, a strange pulling pain, only the pulling wasn’t in the muscles. The forward bends at the end generated the same pulling pain along with a spontaneous headache. I spoke to my teacher about it a while back and gave him permission to do reiki on me during shivasana. That has helped reduce the headaches to something manageable on the way home.

I was exhausted after class. I ended up sleeping for over an hour and could have slept more if a friend didn’t show up to visit. We hung out for a while, good for my spirits. I’ll need a little more of the deep sleep tonight to finish the nap…

My apartment is a mess, mostly the kitchen and my regrown double pile of papers (with all sorts of electronic backlog as well). What I need is two or three healthy-ish days with no plans. Tomorrow won’t be it, I’ll spend 3 hours waiting for my cardiologist and come home wiped out. Oh well. I’m doing better than previously, but I’m still struggling a lot.

For those of you who know me in real life (not just through my blog), you are aware that I’ll talk about anything. Anything at all. Just bring up what’s on your mind and I’m ready to discuss. And if you take too long, I’ll ask you about it myself.

Tonight I’m thinking about blood. Several years ago, I was talking to a few friends about our menstrual cycles and about what we use to catch the blood flow. Needless to say, we had to laugh with embarrassment, and shift in our seats with discomfort (or even disgust). But the conversation opened the first door for me to stop using throw-away pads.

The thing about all the throw-away, single use menstrual products is that they allow a woman to avoid dealing with the fact that there is blood leaking out between her legs. Somehow, we have been conditioned to find this pretty disgusting, even though it really is no more interesting than blowing our noses. (Yup, I frequently use hankies rather than tissues.)

So the first foray into dealing with menstrual blood was when I picked up some GladRags. I had to hand rinse them in the sink and let them dry out before I threw them in the laundry basket. That’s when I finally started to understand the question that my gynecologist asked and that I’d read about in women’s health books: “Do you have a lot of clots in your menstrual flow?”

The answer at the time (and until this month) was yes.

A few years later, one of my friends showed me her Diva Cup. That was a whole new ball game. Not only did I have to deal with the blood directly, not just partially absorbed by cotton, but it was a very involved process to learn how to put it in correctly and figure out how to get it out. I’m glad I did, in part because it made me more comfortable with my anatomy, in part because it doesn’t dry me out (like disposable pads), but mostly because I really started to understand my blood flow.

With this alternate tool in hand, I could see how much blood actually comes out each month (and when it was diminishing and now that it is a more reasonable amount). I can see the color and texture and how much it clots before it exits.

What amazed me this month is that there was only one clot, on the first day, and none after. I’ve read about such a phenomenon but never saw it for myself until these past few days.

The Lyme Herx came in pretty quickly this time. No night sweat, but not terribly restful sleep either. I woke up feeling as trashed as when I went to bed.

My herxing headache, with light sensitivity and sound sensitivity started at about noon, just in time for my doctor visit. I didn’t get to take any Welchol until 2:30. That slowed the progress of the headache, but since I didn’t rest, it didn’t go away.

My mind was scattered all morning. This evening, I’m feeling more playful, even though the pain has now landed in my back as well, and I’ve got an earache in my right ear. I’ve also got some neurological pains starting in my hips and going down the sides of my legs. My joints are hurting, especially my wrists, maybe from the Herx, maybe from the rain.

My doctor wasn’t 100% sure I have tinea versicolor. As the weather has cooled, the itching, redness and brown spots have faded significantly. He gave me a prescription for a cream. I’m going to wait a few days to see if it completely resolves on its own before I add a topical fungicide to my routine.

I’ve got my second huge pimple in a week (just below my jaw bone on the right side). It makes me think I’ve hit another layer of candida removal.

The urinary hesitation has now become rare. However, my urine has been cloudy on and off over the past few days. Also another clue to candida on the move (out).

Herxing can make it hard to sleep. I’ve got my fingers crossed that I’ll sleep well tonight.

My neighborhood is restless with anticipation. I went for a walk today. There were people doing last minute vegetable shopping (like me) in a small vegetable store which I have never seen so empty of produce. Mostly the customers were chatty and friendly, more so than usual. I think people had reached the point where they were as prepared as they were going to get and now it is time to wait.

The last hurricane I lived through was in New York in 1985, Hurricane Gloria. I was 10 years old. Mostly I remember not having to go to school for two days. I remember the heavy rains and the eery silence of the eye of the hurricane when my parents let my sister and me go down to the corner store with my dad.

Hurricane Irene is moving slowly enough that everyone has had more than ample time to prepare, at least up here in NYC. Decisions didn’t have to be rushed. There was enough time to plan and to execute the plans. The city and it’s people are prepared. Now we wait and listen to the rain, talk to our neighbors, call our families to check in and wait some more. The slowness of the day gave me enough space to buy flowers and have a symbol of the beauty of nature to gaze at while I wait out the storm.

In a certain way, the storm preparation of the city reminds me of what I go through each time I do a Lyme Disease coiling treatment. I know that about 2-3 days later, I’m going to get an incapacitating headache followed by a few days of tormenting pain. So I do my best to get everything done before the pain sets in. Then I wait, restless but not anxious, for the storm to arrive and pass through.

Coiling

I tried adding an extra 15 seconds of Babesia treatment on my shoulders. I feel it today. I can only assume that there is a pretty massive infection in my shoulder blades because, once again, after coiling the region for Babesia, my arms hurt all day. My plan, for now, is to do my shoulders every 2-3 days until I can tolerate it daily. No need to incapacitate myself with treatments for one infection when I have so much going on.

I’m not convinced the Lyme Herx is over, but I’m trying to start coiling every 7-10 days for Lyme. So I’m coiling tonight as soon as I’m done writing. (This is 7 days since the last treatment.)

I woke up with pain from my fingertips to my shoulder blades. It took a few hours for that to die down enough for me to have a dull ache that I could work with.

This is the rash that makes my chest itch like it's on fire.

My chest rash is driving me insane with the itching. So I took a photo of it. It was hard to get the lighting right to get a somewhat accurate impression of what it looks like in the mirror. (Flash washes out all the color, no flash makes it too yellow because of the lighting in my bathroom where I used the mirror to aim the camera at my sternum.) I can’t really tell if it is from food sensitivities, or maybe just made worse by them. It could be from the homeopathic remedy (which I think is causing the sustained loose bowels).

The itchiness died down when I was outside. Now that I’m in my warmer apartment, it’s flaring up again. Of course, I’ve had carrot juice since I got home. I’m not sure if the juiced greens will be palatable without any carrot juice, but I’m just about ready to give it a try. Anything to get rid of the itch.

It itches more at night, every night. I’ve taken to sleeping without a shirt because the fabric touching my skin irritates the rash more. It becomes impossible to sleep.

Other than that, my symptoms have been muscular today. My quadriceps and biceps have the sharpest pain. My calves are sore. My shoulder muscles feel tense. My back muscles are achy, too.

In this weather, my joints are popping and crackling a lot. They aren’t too stiff, but there is a moderate level of pain in most of my joints (none come to mind that don’t hurt).

My bowels are still loose. My head aches a little, with extra pain in my right eye. I have floaters in my vision. I’m itchy everywhere, not just my rash, the pin-prickly sensations on my skin are worst on my forearms and abdomen. Urinary hesitation is still going strong (is that made temporarily worse by the homeopathic remedy?). Swollen lymph nodes in my lower back on either side of my sacrum.

Fortunately my pain level doesn’t have me knocked out. Instead I’m able to wander around getting candles and flashlights ready, stocking up on water, listening to the news and buying flowers. I guess I’m in a good mood.

Last night was pretty horrible. The worst pain was coming out of the left side of my lower spine (L3-L5 area) and shooting a burning sensation down my leg. It was all too familiar.

It got me to thinking about the EMG (or all 4 of them because each new neurologist had to redo the damn test) which showed that I had polyradiculopathy on both sides of my spine in the lumbar region. The test itself was extremely painful, as in shouting and tears and muscle spasms up and down my spine. All it showed was that there was a problem, but not what caused the problem. That’s why I was seeing these neurologists, to find out what was causing the problem, not to get an objective assessment that there was one.

I’ve studied some chemistry and read lots about biology and medicine. I sometimes have ideas of what might make interesting research, recognizing that some of the ideas might be impossible to implement. The top on my list is to change how we test for Lyme Disease.

Right now, the test for infection is based on finding human produced antibodies to the borrelia bacteria. As someone whose immune system has gone berserk, I’ve had positive-ish and negative-ish results alternately for several of the tick borne illnesses. So I know from personal experience that antibody tests are notoriously fallible for Lyme Disease.

The alternate test is to try to find the actual bacteria in a high enough quantity to do a PCR analysis and hopefully find evidence of it’s DNA. From what I understand, this has a very high false negative rate because it’s hard to figure out where the bacterial colonies will be. And if you do it with spinal fluid (or blood), you have to hope that enough of it is free floating to get results.

What I would like to ask a research team to investigate is the composition of the neurotoxins that borrelia produce. Then, the goal would be to test for the neurotoxins, either in spinal fluid or blood. It seems like the concentration of neurotoxins might be pretty high given how intense my nerve pain is.

My other idea is to figure out what borrelia eat. I imagine it’s sugar, which might make this hard, but I wonder if it’s possible to generate some kind of dyed compound that is viewable on a CT or MRI scan that shows the location of the borrelia colonies if there are any. I think about this because I read about biofilms and I’m convinced I have a colony living around my lower spine.

I have other ideas, but those were the ones that kept me hoping and wishing last night.

BioMat (30 minutes level 3, 1 hour on negative ions only–because I was too hot to get more heated)

Body

Last night was a really bad Lyme Herx. I was in pain when I was blogging, but it just got worse and worse. I had sharp, hot, shooting pains coming out of my spine down my left leg. The pain was so bad that I could barely put weight on it to get off the couch to go to bed. The muscles in the front of my legs hurt enough to feel weak. My psoas muscle on the left side spasmed. I had sharp, hot fleeting pains in my rib cage, shooting out from my spine. It was bad. I hurt so much I had tears in my eyes.

All I could think was that autumn is going to be horrendous. I might be using a cane again. I sure could have used it last night (but I’d have to walk down my hall to get it and that seemed like unnecessary steps). I’m trying to find my inner Klingon warrior or to channel Malcolm Reynolds’ scorning of torture in the episode “War Stories” of Firefly. I know I’m going to need it to face the pain that’s headed my way.

It took a long time to fall asleep. Besides the sharp pains, I had a painful sensation on the left side of my body from head to toe and I just couldn’t get comfortable. I had a headache on the top of my head, similar to the beginning of a migraine type headache. I also felt pretty weepy. I called a friend and requested bedtime stories to calm my mind before sleep.

I slept until 5am and then woke up with a medium night sweat. I changed my shirt, although it was only borderline necessary. The nice thing was that I was down to the usual hand and foot pain, not the intense nerve pain. Same thing when I woke up again at 8am.

Unfortunately, the nerve pain came back, and the headache with light sensitivity returned to a lesser extent. I was pretty low on energy all day because my pain level was so high. (Oh yeah, and there was an earthquake, which I felt, and which reminded me of when I lived in Los Angeles.) I’m pretty sure the Welchol is mitigating the pain. Although a higher dose might work better, I’m not ready to take more just yet.

In addition to the pain, my abdomen is pretty swollen. My stools were loose and copious again today. And I’ve had a terrible gas attack all night (loud and stinky). I’ve had floaters in my vision all day. And I’m still dealing with urinary hesitation, but less often than before (as in not every time I use the toilet). The glands in my lower back are swollen and tender.

Tonight I’m still having a lot of pain in my legs. My arms are tired and stiff despite the lack of use today. I have a feeling I’ll need another day of rest.

I spent the day today with other artists who are looking at the role capitalist oppression plays in our relationship to our artwork. Some are artists who get income from their work. Some, like me, are not. Still I take writing very seriously.

A few days ago, I was lamenting the fact that I haven’t been writing. It isn’t quite accurate, of course, to say that I haven’t been writing (this is my 177th post). It’s that I haven’t been writing my novel. I miss it. I want to have enough energy to work on it and finish it. The ideas are there. The words are waiting to be inscribed on the pages of my notebooks. I’m not stuck, in the sense of writer’s block. I’m stuck in the sense of my health and recuperation take up a lot of time and energy.

The most I’ve been able to manage to write is this blog. Looking back over the past 160 days, it forms a significant body of work. I’m especially proud of the posts that are informative with what is known about the diseases I have and their treatments as well as the posts that create a picture of what it is like to face long-term health struggles. For now, this is where my writing happens. It’s my top priority.

I still dream of being well enough to write for a few hours a day about the science fiction world I have in my head and the stories that take place there. Short of that, I have a few art projects I’d like to do this summer. I have a few essays I’d like to write. I just need a good week or two in a row with bearable pain levels and no crises.

To be fair, I have used most of my extra energy to reconnect with people. It’s a necessity. I need to be with people I care about when they’re available. I have no regrets that spending time with people precludes having energy left over for writing. My life is a work in progress. More progress on my health will mean more progress in all areas.

Coiling

I considered adding a Bartonella treatment for my head. Then I went over my posts from late spring. I realized that I tended to add new co-infection treatments about 10 days after a Lyme treatment. So I’m feeling less urgent. I’m still Herxing from the Lyme treatment last week. Still have headaches, and my heart symptoms haven’t gone away yet. So I’ll wait to add it until later this week.

Bartonella, chest, 2 minutes; abdomen, 5 minutes

Babesia, chest, 10 minutes

Candida, chest, 2 minutes; abdomen, 10 minutes

Detox

homeopathic support

juiced greens

skin brushing

I gave myself a B-12 shot this morning.

Body

I was really hot last night. I ended up sleeping without a shirt because as soon as I started to drift off, I would get overheated and wake up. The third time this happened, I tossed the shirt aside. I had night sweats more than once, including shortly before I woke up.

I had less hand and foot pain immediately upon waking, though my limbs were rather clumsy as I stumbled around my apartment attempting to start the day.

Once I was up, I’ve had joint pain all day. All my joints. My hands and fingers and wrists and elbows and shoulders. My ribs and spine and neck and jaw. My hips and knees and ankles and feet. Each set of joints hurt for an overlapping portion of the day. It was distracting to say the least.

I’m having tingling in my feet, ankles and lower calves.

I’ve had a headache on and off all day. I have floaters in my vision. I have an earache on both sides, worse on the right. This evening I have a sore throat and a hot itchy rash on my chest.

My heart was bothering me. Several times when I stood up, I felt a mild pain in my upper chest and neck. I wasn’t quite lightheaded, but I could tell that there wasn’t enough blood. My heart was palpitating when I had to climb a flight of stairs. And I needed to be lying down or at least have my legs up all day long.

I feel like this Lyme Herx is going on and on. I also worry that the Lyme bacteria are waking up after the antibiotics have been out of my system for so long. As I write, I wonder if I’ll give up on increasing Bartonella to focus more on Lyme…